Henry had his CT scan this morning and final blood tests before Bristol, and while we were there we found out the final details and arrangements for Friday... thankful for our social worker for hounding all the necessary people!!
Henry's CT scan went really well today. I couldn't go down to theatre with him still due to the new policies with Covid, so it was still really tough seeing him being wheeled off, but he didn't cry at all. He just amazed me! It went quick too and before I knew it he was back in his room having some Rice Krispies and dancing to Hey Duggee on his iPad. We haven't heard the results from it yet but if there's anything concerning I'm sure we will tomorrow. He also got his final bloods taken for his Virology as there was a lot taken yesterday and it would have been too much to take in one go. Thankfully the nurses also gave Henry his daily meds while we were there which meant we didn't need to rush back home to arrange a nurse to come out. Throughout all of this, Henry was absolutely amazing. I know I always say it, but he truly blows me away with his strength and resilience.
While we were there I received a phone call from our amazing social worker. We were meant to hear yesterday about the travel arrangements but the consultant who was to make the decision didn't get round to it before he left the office for the day. This made us a bit anxious, but it gave us another opportunity to let go of control and trust. But after our social worker called and hounded some folk (rightly so!) we got the final answer and details for travel.
Now, in my previous post I mentioned that we were actually preferring one of us taking the car and boat, and in our heads we were pretty settled with that. Then we were told that we were all booked on the air ambulance, but a consultant had to make the decision yes or no due to the risks. So we were a bit up and down in our heads and really didn't have a clue what was happening anymore, and it stalled our packing as we were unsure how much we could bring.
Today we were told that we are all able to go on the air ambulance. So my head and heart didn't really know how to react because we had come to terms with both options. But then we were told that if David took the car and boat, he would have to quarantine for 2 weeks in an apartment. Wow. How awful would that be!?! And how THANKFUL are we now that we can all go in the air ambulance?!? God was ahead of us in all of this. The other night me and David were chatting about the plans and wondering if God was leading us His way and ensuring we took the safest option possible. And this is it. Deep down, I'm also very glad we are now all going together. And it turns out we can actually bring more than we initially thought we could in the air ambulance. I felt so much peace and gratitude after all this. How amazing is God?!?
Woodgate phoned me shortly after and went through all the information with us. We had assumed we would be getting a taxi from Bristol airport to Clic House, which made me nervous as we would be exposed and it would be way more risky. But amazingly we were told we would be getting an ambulance instead! Another answer to my prayers!
So yeah, we are still going on Friday and our flight is at 12noon! We will then arrive at Clic House and have our induction there, hopefully get a food delivery organised (will phone the house manager tomorrow to see what's possible!) and then we can settle until going to hospital on Sunday at 2pm. We have packed the majority of our stuff, gonna sort out all of Henry's belongings tomorrow so will be a busy day! Henry still needs to get his medication tomorrow and Friday morning just for precautions but thankfully the nurses are coming out extra early to do this to ensure we have enough time to do final prep and set sail to the airport.
Today is just felt like everything came together in the best possible way, God's way. We are so so thankful and we are now chilling out before the storm starts. We are aware that what's ahead will be extremely tough and the most difficult thing we have ever experienced, but I think we are ready for it to start now. I want my son cured of this. He will go through a lot of pain, but I keep thinking of the end goal and the strength he has. And we have God holding us every step of the way. I've also been realising that every emotion I feel is healthy and normal, and to make sure I acknowledge and release it rather than burying or hiding it away. Taking time to be still, breathe, focus my energies on the right things, and praying to our God who has came through for us time and time again throughout our journey. Honestly, I'm still pretty anxious about it all, but I know that we will get through it with God. He is holding and protecting my amazing son, and Henry will have an amazing story to tell at the end of this. God has big big plans for his life.
So just about the treatment as I'm not sure I've shared the plan in much detail. On Monday the treatment starts, this is known as Day -10. There will be 10 days of conditioning which will involve chemotherapy. Henry will be getting ALOT of very strong drugs to wipe out his own cells and he will have zero immune system. Most of the drugs are infused over a few hours and are given a couple times a day. This will pretty much wipe him out, and he will get very sick before he gets better. After the conditioning, it's the transplant day. The donated stem cells will be infused, this is Day 0. After this, it's heavy monitoring, battling side effects and waiting for Henry's blood count to come back up. We know there will be side effects, we have talked with plenty of doctors and other families who have had kids go through this, but please pray that these are as few as possible and are handled successfully. We are still so thankful for the medical team we will be with. These guys are experts at this and this gives me so much confidence and comfort.
I'm so thankful for all the messages, prayers, video calls, gifts and visits through the window. It all truly makes us feel so much stronger and connected to an amazing family of people who are walking this battle with us and being prayer warriors. You are all such blessings to my family and I can't wait to see you all on the other side of this (and hopefully give proper hugs again!!). I'll be posting when I can, and doing video updates when I can also. It will take us a while to settle but I am keen to share what God is doing, let you know how Henry is getting on, and to also share prayer requests throughout. I will probably not be replying too many messages tomorrow as we will be busy, and if I don't get back to you just know I am reading the messages and I appreciate them more than you know.
Love you all so much, keep praying for us as we head in to this, and please stay safe and healthy! Sending virtual hugs!!
Giving thanks for the final arrangements and that God is in control of every detail.
The journey over goes smoothly.
We are able to settle in Clic House and enjoy our time together before the treatment starts.
We get a food delivery!
Henry adjusts well to the hospital environment.
Big one, the treatment goes as well as it can be and the transplant is successful.
Side effects and pain are at minimum throughout.
Protection over all the medical team and their families, and other families in the ward.
Strength for myself, David and Henry throughout treatment, and that we are aware and feel God's presence.
That we keep connected as much as possible, and share and release all of our emotions.
We stay healthy so we are at our best for Henry.
People see God in us while we go through this, and we share his goodness, light and love to all people we meet.
Lives are touched, seeds are planted and lives are saved.